Case Studies in Building Equity Through Family Advocacy in Special Education

Lydia Ocasio-Stoutenburg is a lecturer at the University of Miami and advocate for families of children, teens, and adults with disabilities. Beth Harry is a professor emeritus of special education at the University of Miami, and coauthor of Why Are So Many Minority Students in Special Education? Second Edition.

• Contents (Tentative)IntroductionThe Research ProcessA Snapshot of the FamiliesDifference, Intersectionality, and Critical Disability Studies (DisCrit)Co-AdvocacyCases1. Patty: “Even Though She’s His Mom, I Will Never Leave Him”Desperately Seeking Support: First Encounters with Professionals and OrganizationsReasons to Advocate: Minding the Gaps in Every SettingA Community That ExcludesEnacting Advocacy across Multiple Settings“People Appeared Out of Nowhere” The Helpers, Supporters and Co-ConstructorsGoals for The Future: “Nobody Does It Like You”“Let’s Resolve”: Patty’s Self-Reflections as an AdvocateFollowing Up: Observing Patty in ActionPost-COVID Update2. Jenny: “This is a Family”Not Your Typical Medical Foster Home: “This Is a Big Family Setting”Views from the Intersection: Disability, Mental Health, Puberty and TransitionUnderstanding the Foster Care Linkage: Who are the Allies?Nora Revealed: Advocacy and Self-Advocacy in ActionPost-COVID Frustrations: “It Tore her Apart”Reflections of a Caregiver Advocate3. Rhonda: “I Am Her Voice”: Fighting for Respect and a Normalized Adolescence“We Just Have to Wait and See”High School and Beyond: The IEP—“Just a Piece of Paper”Countering Negativity and Poor CommunicationSisters and SupportersBeing a Teenager: Creating a Social LifeSenior Year Advocacy: Let Me Be Brave in My AttemptThe COVID-19 Pandemic: Virtual Learning as a “Blessing” and a RevelationFinding Light at the End of the TunnelRhonda’s Reflections: The Meaning of Advocacy4. Myra: “I Came With My Books as My Honor and My Weaponry”Identity and Disability IntersectionsA “Top-Tier Advocate”Advocating for Identification and ServicesAn Early TransitionAdvocacy Then and Now: Change within the Status Quo5. Marie: “I Want Him to Have a Voice”A Twice-Exceptional Family“You Have to Meet this Mom!” Mother Love, Intuition and Seeing the Whole ChildEnacting Advocacy across Multiple Environments“She’s my Backup”: The Supporters, Helpers and Co-ConstructorsThe Community Filling in the GapsCOVID Follow Up: Restrictions, Racism and “Regular”“I’m Not Afraid of Anything”: Reflecting on Her Role as an Advocate6. Ana: “Whatever You Need, I’m On Your Team”Social and Cultural Capital: “I Know How to Speak to Them”Enacting Advocacy: “Autism is an Expensive Disorder”Navigating Community and Social ExperiencesCo-Advocacy: Making the Ideal a RealityFollowing up with the Outcomes of Advocacy“My Fear Is Coming Out of It”: COVID-19 and Challenges of Social Distancing“I Wouldn’t Have it Any Other Way”: Ana’s Self-Reflections as an Advocate7. Linda: “As a Mom, You Have Those Feelings, and You Do What You Have to Do”Engaging With Professionals Before and After Delivery: “It Should be More Reassuring”Dismissals and Misunderstandings: “Give Him the Diagnosis That Was Appropriate”Advocating Within the Family: Acceptance, Compromising, and SupportTony’s Emerging Adolescence: Fitting in or Not?Enacting AdvocacyKnowing Who to Lean on: The Allies of AdvocacyPost-COVID: “We’ve Really Seen Him Flourish, Believe It or Not, in This Time”Reflections: “The Next Day is a New Day”8. Sonia and Zoe: “Different Isn’t the End of the World”“Hooray, Giselle”!Strong Family Bonds, Strong Family RolesAdvocacy Allies: Helpers and Supporters Who Made a DifferenceDifferent Contexts, Different Advocates: The Power of Social PerceptionsObservation: “There’s No Place Like That Place”COVID Follow-Up: “We Got to Do Better”Advocacy Reflections9. Carlos and Betty: “It’s Not About Me . . . It’s About Someone Who Needs Me”Advocating Before Birth: “He’s Our Son, Of Course We Are Keeping Him”Identity, Culture and Disability: A Family PerspectiveAdvocating within the Family: Intersections of Disability, Culture, and Socio-Economic StatusUnexpected Exclusions within the Disability CommunityAllies of Advocacy: “Building Community”Observation: “Since I know Him Better Than They Do”COVID-19 and UpdatesAdvocacy Reflections10. Althea: “We Are Warriors in Ourselves”Intersections and Perceptions: Family, Identity and DisabilityFirst Encounters with Professionals: Dismissal without DiagnosisAdvocating Across Contexts: Disability and SusceptibilityAllies of AdvocacyReturning to the ObservationCOVID-19 and Follow UpSpeech: “I Had to Make A Stand”Advocacy Reflections: “There’s No Voice!”11. Specializing in Human BeingsWhat Do Parents Want? Value and OpportunityWhat Makes a Great Advocate?What Do Families Need for Their Advocacy to Be Effective? Reciprocity and EquityRealistic Expectations But Hope for the FutureReferencesIndexAbout the Authors

“This book is worthwhile in its own right and could be enjoyed as a supplement to Meeting Families Where They Are.”—CHOICE